Half Truths

A lie told often enough becomes the truth.

Vladimir Lenin

Last week I found myself lying...a lot. Not evil, deceptive life-changing lies, more like small innocent "I'm lying to you because I don't want to have to explain myself to you..it's more of a half truth" kind of lie. We chronically ill patients do this a lot. (Just admit it, you do) And often times, it becomes such a part of what we do, such the norm that we don't even realize it's a lie aka half truth.

Let me explain. Most chronically ill patients, who live with an invisible or rarely visible illness or disability will, at some point or another lie about their symptoms. Lying about how we're feeling is one thing as most of us will say "we're fine" when we're really not. But we often lie about our symptoms in order to avoid crazy looks, side eye, or the "what are you talking about"  conversation where we have to elaborately explain ourselves. And I don't mean lying to health care professionals because we're embarassed about our symptoms, I mean lying to people who don't know about our illness or don't understand our disease/condition (coworkers, family members in denial, distant friends, the health nut friend who believes if you just run a mile and eat some broccoli you'll feel better etc.) 

We lie because it's one less thing we have to emotionally deal with and mentally process. One less exhausting conversation that doesn't need to be had. In the last 7 years, here's a quick list of "lies" I've told family, friends but especially bosses and coworkers when I've had to take yet another sick day that they will undoutedly not understand or feel empathtic towards if they heard the truth. 

1. The lie: "I have food poisoning."/ The truth: "I have really terrible, debilitating acid reflux and GERD that renders me incapable of moving." Why lie? 

Because no one in their right mind would believe that I need a day off from work because of acid reflux. But the truth is, I do. I once ate an (ONE) Oreo cookie and I was burping and regurgitating acid for 12 hrs. My esophogus was on fire, I couldn't find a single comfortable position to lie in, and no amount of Tums or Pepcid or Nexium was working. Patients with scleroderma suffer from excess collagen build up in the esaphogus, this leads to painful heart burn and probelms with digestion. So technically, "food poisoning" is what's happening. Your body is technically feeling poisoned by almost anything you ingest, made really worse by chocolate, acidic foods (pineapples, lemons, oranges, tomatoes, etc), and even a glass of water on an empty stomach. 

Therefore, when I suffer from terrible GERD, (which happens only occasionaly now since I eat barely anything) I simply tell people who don't know my background that I have food poisoning, from what? Bad Chinese, or Taco Hell or Pizza...and it shuts them up quickly, because NO ONE...and I mean NO ONE wants to hear the details of food poisoning. 

2. The lie: "I didn't get much sleep last night."/ The truth: "I haven't slept in 2 weeks due to chronic pain or prednisone and it's finally catching up to me, if I do anything other than stare at a wall there's a possibility I will completely lose my shit and someone will get hurt." Why lie?

Because if you tell people that the reason you look like a zombie is because you haven't slept in 2 or more weeks they will assume that you suffer from depression, watch too much Netflix, are irresponsible, or should probably just take some melatonin or workout more. Normal, healthy people are under the false delusion that not sleeping is a choice. Trust me, it's not. But you can't explain that to normal people, they just don't get. "Oh have you tried going to sleep earlier?" "Have you tried medicine, but you shouldn't cause then you'll get dependent." "I drink a glass of wine and that puts me right to bed, you should try it!" "Work out more, it will help you sleep better." And on and on. Because apprarently the only people who have a legitimate reason for not sleeping are people with babies. 

3. The lie: "It feels like I'm coming down with something."/The truth: "Every muscle in body aches, brushing my teeth requires more effort than it would take you to run a marathon, my joints are swollen, I have chills, and my skin hurts." Why lie?

Because saying all of that requires too much effort. And unless YOUR skin...yes SKIN on your ENTIRE body has ever hurt from something other than a burn, you don't understand what I'm talking about. If I say I'm coming down with something which usually means a flare up, at least all you'll tell me is to rest and drink some OJ (which I can't do anyway because of the acid reflux), but I'll smile and nod and the conversation will be over. Then you'll sanitize your hands and walk away.

4. The lie: "Sorry I can't go out tonight, this weather is miserable."/ The truth: "I'm miserable. This weather is making me miserable. Everything hurts. I'm fatigued. It's too cold or too hot to do anything but sit on this couch like a human vegetable. I feel 80 and I'm only 30. No, I don't have the energy to traipse around town in this miserable weather, feeling miserable." Why lie?

Because if you tell people..at MY age...that the weather is making your joints ache, they give you side eye and say obnioxious things like "You're too young to have arthritis/feel the weather in your bones....!" No. I'm. Not. 

5. The lie: "I'm just tired. I had a really long week."/ The Truth: "I'm EXHAUSTED. Fatigued. From getting out of bed and making it to the couch." Why lie?

Because "fatigue" is not considered a disease, (recently Chronic Fatigue Syndrome has been renamed and officially classified as a disease, but it's still not repected among the average layperson). If people knew what I REALLY did all week and still had the nerve to turn down social events they would just assume I'm a flake, which they probably already do since most people assume that working from home means I get to sleep all day and work in my pajamas, but all it really means is that I have to juggle a 40hr work week around doctor's appointments, labs, prescription refills, being on hold, paying medical bills and etc.  But people's perceptions of what they think I do all day don't bother me anymore. Let them think what they want, I know what I endure every single day. 

6. The lie: "Sorry I didn't call you back. The day got so crazy busy."/The Truth: "I really am sorry I didn't call you back, but my brain fog doesn't allow me to remember what I'm doing while I'm doing it much less who I need to call back, or what I need to or should be doing in the next five minutes." Why lie?

Because admitting that you're an easily distracted 30 year old does not bode well with co workers or your boss. I've lost track of what I'm talking about while I'm saying it at meetings and on conference calls. It used to bother me a lot, now I just shake it off and pretend like I'm the ditsy one of the group. We all laugh about it and let it go. The less I make it an issue, the less it becomes one. I've learned to take copious notes though! 

7. The lie: "I'm just emotional/I'm PMSing." /The Truth: "I am incredibly sad and probably depressed because dealing with chronic illness and pain is mentally and emotionally exhausting but I can't cry like I want to because that only makes my illness worse, so I have to bottle it up inside and cry and mourn in short bursts so that I don't have a stress-induced flare up." Why lie?

Because if you tell people the truth they will insist that you should just "let it all out...it will be good for you." But they don't understand how debilitating a flare up can be...hmm should I just cry it out for a whole day and then be bedridden for a week, or should I just cry quietly in my car or in the shower every now and again for 2 minutes and still be able to function? I'll go with the latter, thanks.

8. And the lie of all lies, the one that gets used most often: "I just don't feel well."/ The Truth: "I am having a terrible, horrible, no good very bad day...every day this week and most days of my life. I'm probably having tachycardia, or shortness of breath, or side pain, or high blood pressure, or low blood pressure, or fatigue, or nauseau, or swelling, or pain, or side effects from one of the many drugs I'm taking or any combination of the above." Why lie?

Because, no one, who doesn't really love you actually wants to hear the truth. (Except your doctor, and that's only if you have one that acutally cares) They don't want to hear that you're not "better" and that you're not going to "get better." That your existence is one of perpetual chronic pain and illness. That some days are just a little less worse than others. That your body never lets you forget how hard it's working just to function. Because minimizing our pain allows us to exude a little bit of normalcy. And, again, because explaining all of your symptoms to someone who doesn't know you well makes you sound like a hypochondriac and how could someone who doesn't have cancer, feel so sick? Impossible! 

This is not to say that we don't share our deepest and darkest moments at all, we do, but only with those we can trust with the information. I don't mind lying, it's saved me a lot of time and internal eye rolling at well intentioned but ignorant comments and suggestions. And I guess the cat's out of the bag now, but truth is sometimes even the little white lies and half truths can be hard to keep up with.

Did I say I had food poisoning or the flu this time?

What did I just say I was doing on FB? Better not post something witty and funny on FB if you've told someone you're having a bad day cause then they won't believe you.

Didn't I just say I was PMSing a week ago...?

You kind of start to feel like Huck Finn and it can be a little exhausting, but I suppose it's a fair trade off for having to constantly explain and justify the unpredictability of your life and illness to those who just don't or won't get it. 

What white lies or half truths have you told about your illness or symptoms?

100th Post!

Wow, here it is..my  100th post on this blog! Yay! Go me!

I suppose I should've reached this milestone sooner, considering I've had this blog for...almost 5 years now...but alas...life is what happens when you're busy making other plans.

Now, I suppose I should write some epic post enlightening and inspiring all of my readers out there. But the truth is, I'm not feeling very inspirational at the moment.

A pseudo heart attack on the side of the freeway will do that to you. (More about that another time..no worries..all is well...apparently I just needed to breathe)

So, instead...I will share with you 100 random things. A few updates and things I'm excited about in the present. Some quirky things about the past. And maybe a look into the future. Here goes, my 100 random things for my 100th post:

1. I am super excited about reading at the Examined Life Conference: Writing, Humanities, Art & Medicine. 
2. I had an amazing time performing and selling books at the Raw Houston Visionary Showcase

Performing @ Raw Houston

3. I am officially an aunt! My brother had a little girl named Adamaris.
4. I am going to be an aunt for the second time this summer! My sister is pregnant and due in August.

My niece Adamaris

5. All of that makes me very happy and very sad because I want to be pregnant too.
6. My parents are both retired now. CONGRATS Mom and Dad!
7. They are moving to the DR in March so my dad can study medicine and find a cure....*crickets*
8. I submitted my book to be reviewed for the Latino Book Awards. Will learn if I am a finalist in March.
9. I still have too much protein in my urine.
10. I now also have anemia...but I can't eat meat because of the protein...catch 22
11. No one notices my missing fingertip unless I point it out to them...but I am still self conscious about it.
12. After I turned 30 I started getting zits...boo
13. I have made so many friends through my sclero journey. They inspire me everyday.
14. Having friends with scleroderma is hard because they die.
15. I once wrote a blog post in reference to Bill Cosby...now I kind of regret it.
16. I am a vegeterian now, which means I'm hungry all the time...still learning what to eat.
17. I have changed the title to my second book at least 4 times already.
18. There are very few female spoken word artists that I like...they just don't have good stage presence...there...I said it.
19. I think Lupus sucks worse than Scleroderma.
20. My favorite color is purple- in case you hadn't noticed.
21. My favorite authors are Toni Morrison and Virginia Woolf
22. I still want a Ph.d. I just don't know it what yet.
23. My favorite TV show is Criminal Minds and House
24. I have a doctor for almost every organ in my body. (Rheumatologist, Nephrologist, Dermatologist, Cardiologist, Endocronologist, Nuerologist, Pulmonologist)
25. My left wrist is currently swollen..making it hard to write this post.

Swollen Wrist..ouch 

26. I want to go on another yoga retreat.
27. I have been meaning to make more friends since 2007...still hasn't really happened...I need to make more friends.
28. Taking care of myself is hard, and stressful, and a lot of work.
29. I've learned that telling myself "it could be worse" doesn't really help.
30. I spent a lot of time in the past being angry.
31. Normal weight women who "diet" get on my nerves. Like seriously?! That's your BIGGEST problem?
32. I believe that people respect cancer, because they fear it. They believe they understand its strength. People don't respect diseases like Lupus and Scleroderma...mainly because they don't understand them...so as long as it's not contaigous, they just assume you can go on about your life.
33. When I don't sleep, my husband doesn't sleep...it's kind of not fair. Sorry Lupe.

My Meds

34. So many people that I know and love say they wish they could take away my pain. But even if they could, the emotional scars would remain. You can't unlive something. The memory remains.
35. My favorite ice cream is pistacio almond....cause it's green.
36. My favorite vitamin is B12--gives you natural energy.
37. I hate prednisone.
38. I have small veins...which means I get poked with needles A LOT.
39. Apparently I owe Memorial Hermann Hospital $14,000....HA!
40. My second book doesn't have an ending yet...that's why I hate working on it.
41. Prayer is talking to God. Meditation is allowing him to talk to you.
42. I was recently interviewed for another blog: Black Girl Latin World ...it was neat!
43. February is Heart Health Awareness month- #GoRedSelfie
44. I miss teaching.
45. I miss acting.
46. I'm trying to learn how to let go...and let God.
47. I hate Mindy.
48. Bubble baths are great.
49. I don't want to want to be a mother anymore...it's too exhausting and disappointing.
50. I wish I had the money to go to Greece.
51. My hair is longer now than it has ever been...yay for hair care!
52. My dog Whiskey keeps me sane most days when I'm home alone with too much time on my hands.

Whiskey...as happy as can be

53. I'm pretty sure I'm addicted to Facebook.
54. I miss wine.
55. I miss chocolate...I eat it now and then...and then soon regret it.
56. I miss buffalo wings...mmm..buffalo wings.
57. It hurts to breathe...that sucks.
58. This is a really long post.
59. There is nothing more humbling than losing the use of your hands. Nothing.
60. I wish there was such thing as a boob sling. Not a bra..a sling...something that lifted my boob off my rib cage without having to touch my rib cage. Any pressure on my ribs hurts...a lot.
61. I realize now, that being a homemaker/housewife is nothing to be ashamed of. It takes a lot of work to make a home for your family...I'm sorry I ever felt any disdain for my own mother for staying at home.
62. I am still considering becoming a speech therapist...what better gift than to give someone the power of speech.
63. I hate slam poetry. Like really HATE. IT. (Not spoken word...that's different..competitive slam poetry is horrible)
64. I would give almost anything to be able to sleep lying flat again.
65. I think Lupe is the cutest, sexiest man ever. I don't deserve him.
66. I have great in-laws. The first time I had to stay in the hospital, my mother in law gave me a sponge bath- now that's love.
67. My best friend is getting married in May- I am so happy for her!
68. I finally have a hammock- I just need to hang it up!
69. For awhile, I dreaded performing because the brain fog made me forget things and I was terrified of forgetting poems I'd known for years.
70. I'm pretty sure I suffer from anxiety.
71. Writing this post is the perfect excuse for not working on my book.
72. I started a Novena today...(a 9 day prayer)...let's see what comes of it..peace of mind at least I hope.
73. I collect quotes..literally..I have a quote book I write them down in.
74. Hospitals don't scare me anymore. I find them interesting and quite comical at times.
75. I cringe when I think about how much I've spent on medical bills in the last 7 years...do you know how many vacations I could've gone on!?

Bubble Tea and Teaching

76. Bubble tea is delicious.
77. I love playing Cranium.
78. I am an introvert.
79. For a long time I didn't like my brother.
80. But sometimes, you have to accept the apology you never got.
81. Doctors are people too. They are not infallible, never forget that.
82. The quality of my life is more important than the quantity.
83. I miss simplicity.
84. I haven't been able to wear my wedding ring on the right finger for 5 years...I've been married for...5 years.
85. I really like cupcakes.
86. I lost my original engagement ring in a kareoke bar two months before my wedding...it was sad...very sad...I still don't like to talk about it.
87. This post is making me sleepy.
88. I love Missy Elliott.

Me and Mom near the beach in DR

89.My favorite band right now is Florence & the Machine
90. I have terrible night vision while driving.
91. I have to constantly remind myself that none of this is my fault.
92. I started this blog during a really stressful time in my life when I couldn't sleep and hated my job.
93. I've yo yoed a lot in the last five years, but I'm glad I've kept up with this.
94. ER doctors are useless.
95. Cellcept is good for everything except indigestion, it makes my GERD really bad
96. I wish I were on a beach somewhere..the water is the only place I feel whole.
97. Yoga saved my life
98. And so did writing.
99. In another life, Lupe and I own a bookstore/comic shop/bakery.
100. All I really want is to have the energy to teach theatre and speech again.

Home Is Wherever I'm With You

When you finally go back to your old home, you find it wasn't the old home you missed but your childhood.

Sam Ewing

I took my dog Whiskey for a long walk this morning to explore our new neighborhood. Even though we've been moved into our new home for over a month now, the weather in Houston hasn't really allowed me to go out much (rain, cold yuckiness). But, it has cleared up the last few days and the swelling in my joints is minimal so I couldn't resist. 

The backyard...and Whiskey

I love the outdoors, despite it's potentially negative effects on my health, it makes me feel whole and alive, so for now I will enjoy it as long as I can. In fact, this post is being written on my new back porch. And I feel so at peace. 

Well, as Whiskey and I explored the new "hood" I realized what I loved about it, why I have always been drawn to older suburbs rather than new ones: they remind me of the homes/houses I grew up in. As a military brat I am from "nowhere and everywhere all at once." I have always struggled with the concept of home, because for me, it was always just a "house until"... There was always a set expiration date. I knew we would move, it was not permanent. (For more on this part of my life read my memoir Island of Dreams)

And yet, my parents DID manage to make each house feel like a home. With warm yummy smells, a garden, parties, family and friends, love, religion, comfort and overall happiness. The houses I grew up in were all built in the 60s, 70s and 80s with shag carpet or wood floors, wood paneling (my new house DOES NOT have wood paneling, thank God), gas stoves, large back yards, wire fences, tall 30 year old trees and a lot of quiet. 

The front of the new house!

My new, permanent home is much the same. Sure, it's been remodeled to look new on the inside, but the neighborhood itself feels like a flashback to a much simpler time in my life. I can honestly say that I was blessed with a very happy childhood. We made popsicles in the ice tray during the summer, ate watermelon till we got sick, splashed around with a hose, ate home cooked meals at the dinner table every night, and went on family road trips at least once a year. 

We lived the American dream. I was an extremely healthy child who grew up in a home where my dad worked and my mom stayed home raising the kids until we were all in school. It was quite idyllic. And truthfully, I am thankful for that. 

Me on my 6th or 7th Birthday. 

My childhood may not have given me the life experience to deal with something as big and as life-changing as chronic illness but it did provide me with the support system to do so. My mom gave me faith by taking us to church every Sunday. My father gave me strength by always telling me to just shake it off (when I fell off a bike, or didn't get a part in the play). My sister added color and creativity. My brother showed me resilience and confidence by introducing me to theatre and writing and poetry. Our military life has allowed me to always go with the flow and embrace change. I learned to depend on myself and take care of others by being a latch-key kid who made my brother and sister an after school snack because mami had to work when papi went to war. It wasn't always easy, but it wasn't a childhood that hurt. 

In recent months, I have come to the conclusion that most people either have crappy childhoods and a pretty awesome adult life or a great childhood and a pretty crappy adult life. (Some people get a raw deal on both ends sometimes which is unfortunate) Which, at first made me quite cynical, because after all, adulthood lasts SO MUCH LONGER than childhood, but now, after some deep reflection, I realize that our childhood is what shapes us as a adults. It creates our character and informs our decisions as we get older. 

My favorite room in the house- the library/office

I can't imagine how I might be dealing with chronic illness had I also had an ugly childhood (alcoholism, depression, drugs etc.??) I can say that I am grateful for the ease and joy with which I lived my young days. I reminisce about those days often as it brings me comfort and hope  when I don't know if and when the pain or fatigue will end. I deal with never ending facets of these diseases by praying, meditating, calling my mom, taking care of myself and my husband, and knowing that if simpler times are behind me, I can still believe in simpler times ahead. 

It's quiet here. The sunlight comes in through windows. I hear the train whistle every night and every morning. I cook happily. I clean out of pride. Even though I miss our old townhome, the one where Lupe and I spent our first few years together, it never really felt like my home. I tried very hard to feel at ease there, but I just never could. I believe that living in a house and in a neighborhood that reminds me of simpler, happier times, a home we bought and will build together, will be good for my soul and my overall health. I am hoping that this new house, in this old neighborhood will be the place where Lupe and I can plant our roots and watch our lives grow (in whatever way the Universe intends).  It won't be easy, but I also believe that it won't hurt. 

Closing day...we bought a house!

Looking Back, Moving Forward

Happy New Year! Time let go of the old and look forward to the new.

2014 wasn't easy but I was blessed. I lost a fingertip but gained a new house. I turned 30 and went back on hard core meds. The rest of the year is kind of a blur to be honest. I spent a lot of time in the hospital. A lot of time in pain. A lot of time recovering from one surgery or another. A lot of time "finding the joy." A lot of time crying and asking why. A lot of time trying to be grateful.

In 2015 the only thing I resolve to do is finish my second book...oh and continue doing the things that make me happy (cooking, yoga, loving my husband). I have no intention of trying to write every day, or drink more water, or lose weight or anything that requires a certain amount of dedication that I just won't be able to commit due to the unpredictability of my life and flare ups.

All I plan to do is take it one page at a time. (My book that is) If I can write more often, I know I can get it done. And I know that now is the time.

Look forward to progress blog posts in the coming months! That's it for now...I'm emotionally drained at the moment and have no more words of wisdom or insight to share. I hope you and yours had a great holiday season...till next time!



Hugs & Chocolate

A Book Review

"Great books help you understand, and they help you feel understood." –John Green

Laurie's Website

I realize that I have never done a book review on this blog. And as a writer, I know that is somehow wrong, very wrong. So I apologize to my readers for taking so long to do this, but perhaps that is because it has only been recently that I have intentionally looked for and have been reading books by and about people with chronic illness.

I recently felt that I wasn't getting anywhere with my second memoir and needed to be able to approach the story more objectively. I felt like I was spinning my wheels, complaining too much, and struggling to find an adequate and fulfilling ending. So, as any good writer would do, I stopped writing and decided to start reading. I decided to focus my reading on what I found out are called "illness narratives." Stories, both fiction and non-fiction abot illness (living with it, managing it, understanding it etc.) Over the summer I read Autobiography of a Face by Lucy Grealy (Cancer-not as great as I'd hoped), The Fault in Our Stars by John Green(Cancer-MUCH better than expected), and Waiting for Daisy by Peggy Orenstein (re read it, very objective book about infertility).

As I continued to research books and illness narratives (preferably about something OTHER than cancer, not hating, just feel like cancer is the Marsha Brady of illness) I came across the non-fiction sociology book In the Kingdom of the Sick by Laurie Edwards. I was intrigued by the book reviews, the prescription pill bottle on the cover and the very catchy title. I recently made a comment on Facebook about how I used to live in the light but now I live in the dark but can see the beauty of the stars, and the title of this book actually comes from a quote by Susan Sontag precisely about that:

So, I picked up the book, delved right in, and have learned SO much.

For those of you that follow me on Facebook, you know I've been ranting and raving about this book for a couple of weeks. I'm about 75% done with it (have slowed down my reading due to moving) but even if the end sucks (which I doubt it will), I have gained a new and better understanding of not only the medical community, but of where my own biases, insecurities and overall mentality about my chronic illness comes from.

And guess what...all the feelings I have felt in the past (and I'm sure many of you have also)...THEY'RE NOT YOUR FAULT! And those feelings are real, it's not in your head! I'm not neccessarily talking about feelings of pain, I'm referring to those feelings of not being heard and understood by your doctors and nurses or those times you felt belittled by a male doctor (if you're female) for dismissing your symptoms and telling you it's in your head. Guess what? You now have the priveledge of blaming our society, and the social bias against accepting and understanding chronic illness and pain.

These are just a few of the insights I've gained from reading this book so far. Although I started reading the book a little apprehensively because I didn't want to be bombarded with technical terms, cold statistics, hard to read jargon, and a boring timeline of illness, after just a few pages in, I realized this book was none of that.

What I love about this book is the following:

1. Laurie Edwards suffers from chronic illness and pain herself. She has made it her job in life to study the psychosocial effects of illness, and to advocate for patient rights. I trust her research, personal experiences and information more than I would someone else's.
2. The book effortlessly combines meaningful statistics and information with real life patient stories and anectdotes.
3. She dedicates two whole chapters on breaking down why women's health issues are so misunderstood, undervalued, and misdiagnosed.
4. She makes it a point to discuss illnesses that are not just cancer.
5. She really helps you understand why doctors struggle with diagnosing and treating chronic pain.
6. It's easy to read, supported by data, and provides various sides of controversial issues.

What I wish this book did more of: (Although I'm not finished, so it may do this near the end, but doubtful)

1. Study the different experiences with doctors and hospitals of minorities with chronic illness vs. those of caucasians. She often makes a note of how there are differences but doesn't expand on them.
2. Discuss how (socially and culturally) minorities manage chronic pain and illness differently and how that impacts survival rates, treatment etc.

As you can see, there is not much more that I would change or add and the little I would like to learn more about it is clearly based on my own racial bias. This is a book I wish I would've read the day after my diagnosis. It would have saved me so many years of heartache, frustration, guilt and shame. But perhaps it came into my life right when I needed it most, I don't know if I would have had the same openness to accept the information then as I do now.

This is a book I want to gift to all of my chronically ill friends. I highly recommend reading it, as anyone, from a health professional to a patient to a caregiver can gain a lot of insight on how and why the medical community is the way it is and why we think and feel what we do when we see doctors.

I'd love to share more about all the things this book has made me feel, but I'll just let some of my favorite quotes and "aha" moments do it for me...and perhaps it will entice YOU to read the book or buy it for that friend of yours that has Fibromyalgia or MS.

Aha Moments and Favorite Quotes:

Chapter 1:
"Chronic illness is the leading cause of death and disability in this country, with seven out of every ten deaths attributed to chronic diseases"(Edwards, 11).

"'The fact that you're just not going to get better seems unbelievable to most people.....There must be something you can do that you aren't doing.....something should work, and if you're not better, then you're not working hard enough. It's frustrating, it's everywhere...and it's just wrong....I can't think or eat or exercise my way out of these illnesses, no matter how hard I try'"(27).

Chapter 2:

"The very nature of chronic illness--- debilitating symptoms, physical side effects of medications, the gradual slowing down as diseases progress--- is antiethical to the cult of improvement and enhancement that so permeates pop culture" (34).

"'For decades now, life expectancy has been rising. But the longer we live, the longer we die'"(Gever/Edwards 44)

Chapter 3:

"We should not treat incurable people as unsolvable problems"(67).

Chapter 4:(Women's Health Movement and Patient Empowerment) 
Probably my favorite chapter

"For years, it didn't occur to me that I could argue with my doctor's results, even if they were contrary to what my body was telling me" (74).

"'Just because we don't understand the cause doesn't mean it is not real...This is part of what's so bad about this disease. People feel responsible for it'" (75).

"A survey taken by the [AARD] found that 45% of patients with autoimmune disease were labeled as chronic complainers early in their diagnostic journeys, with the resulting delay in diagnosis often leading to organ damage from lack of appropriate treatment" (78).

"Unless you live with and experience the looming threat of symptoms firsthand, you can't possibly understand the emotional and physical toll of chronic illness" (85).

Chapter 5:

 "Another potential consequence of cause-related marketing and activism is the expectations put on patients...'the tyranny of cheerfulness' is associated with many of these events (runs/walks). We know how comforting and necessary images of empowered survivors are. However such emphasis doesn't leave room for people who don't see this diagnosis as a lucky gift..The issues apply with chronic illness...For one, there is obviously no finish line...we just live with the symptoms that wax and wane...Without the finish line that denotes survivorship, there is not the same level of cultural awareness or acceptance of our diseases" (100-101)

"The phrase Tired Girls has stayed with me for years, because I know so many Tired Girls, because when some of my conditions flare, I am that Tired Girl who pays for the eneregy she expends...The Tired Girl stands for so much that society disdains: weakness, exhaustion, dependence, unreliability, and the inability to get better...She is far removed from the cancer survior triumphantly crossing the finish line....[she] has few cheerleaders...and often... wouldn't even know how to define what or where [her]  finish line is" (103).

Chapter 6:

"'The Girl Who Cried Pain' found that women's reports of pain are taken less seriously than men's and they are less likely to receive aggressive treatment than are men. In fact, research shows that men who report pain are more likely to receive painkillers...while women are given antidepressants" (115).

"Lack of understanding from physicians is both an individual and institutional problem; even in the last years of the 20th century, pain was not an established part of medical school curricula"(118) - My WTF moment

"While chronic pain is as prevalent as cancer, cardiovascular disease, and diabetes combined, the NIH spends 96% less on research on chronic pain than on these conditions"(126).

That's it so far...I am in the middle of Chapter 7 of 9 chapters total. There were so many more quotes, but I'll let you pick up the book to read more. I am fascinated by what I've learned so far and intend on picking up her first book: Life Disrupted: Getting Real About Chronic Illness in Your 20s and 30s

I truly appreciate this book because it has allowed me to better understand why my doctors behave the way they do, how fortunate I am to actually be living in this century and not just a few decades earlier when technology wasn't as advanced and Scleroderma was a death sentence. And even though I get frustrated by the lack of answers I get at hospitals and doctor's offices, I now know that the field of medicine is still a very new field and doctors are only doing what they can with the little knowledge they have. While I will always demand respect as a patient and intend to have a say in my care and treatment, I cannot get upset with the trial and error process of treating my disease anymore.

It is what it is. Kind of like when I try a new lesson on my group of 25+ students and somehow only 12 get it....what do I do? I reteach, and try again until I get it right. But you know there's always that ONE kid...either way, it doesn't do any of us any good to get mad at me or the kid(s)...we just have to keep trying till the light bulb turns on, or in my case, the treatments work.

I hope to use what I learned from this book to approach my memoir more objectively and reflect on past experiences with my illness and with doctors and hospitals in a more compassionate and understanding way. I also hope it will inform and guide my future interactions with the medical community so that I can receive better care and learn to thrive in life and not just survive.

My next book review will be on The Wounded Storyteller by Arthur Frank which discusses the literary theory and structure of illness narratives. (Basically the three stypes of narratives that authors can use to tell their story). I am also still very much interested in reading memoir about illness so if you have any recommendations, please share!